Ideas for pain relief from Small Fiber Neuropathy (SFN)

Posted by somisgirl @somisgirl, Sep 6, 2019

I just wanted to pass along some ideas for those of you with idiopathic small fiber neuropathy. I am a 60-year-old female in excellent health other than the onset of this about a year ago. I do not have diabetes or any other detectable health issues.
I started some new things a few weeks ago and this week I have had some remarkable relief. I am not sure if what I have done is why, or which thing might have helped, but still wanted to pass this along just to give some of you some things to try.

I wear compression socks. This seems to help with the pain and pressure I feel in my feet and ankles.
I started taking Evening of Primrose oil twice a day.
I have cut my caffeine intake by at least two-thirds and now drink mostly green or black tea. I had heard that caffeine could irritate nerves…worth a shot.
I exercise, which I have been doing for over 20 years. I think it improves circulation which I think really helps with nerve health.
I added niacin. I will aid in blood flow, also good for circulation.
I use a cream called DMSO which i put on my feet and ankles in the morning (numbs the pain)

I don’t know if any of this could be helpful for you or not, But I seem greatly improved recently……I have tried everything and am always looking for new things to try in order to function with this awful condition.
I am still taking 600mg of Gabapentin 3 times a day and 20 mg Citalopram once a day and have been for 9 months. I do not take any other medications.

Blessings to all of you and I hope there is a cure some day. I intend to keep looking for solutions that do not require medications!

@barbbie

My pain management doctor texted me the following when I asked about regenerative medicine:
There's better stuff, stem cells are not very viable when you put them from one place to another. Look up exosomes.

Jump to this post

@barbie that's a short answer from a pain management doctor. Well, I did a quick search for you but I'm still not sure I get the point the doctor was trying to make with the text.

Mesenchymal stem cell exosomes: a two-edged sword in cancer therapy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6488158/

The Mayo Clinic uses Nanoparticle Tracking Analysis to Study the Behavior of Exosomes and Microvesicles
https://www.exosome-rna.com/the-mayo-clinic-uses-nanoparticle-tracking-analysis-to-study-the-behavior-of-exosomes-and-microvesicles/

REPLY
@jeffrapp

@iceblue, I'll give it a try. This is a very complex and confusing subject.
The terms polyneuropathy, peripheral neuropathy, and neuropathy are often used interchangeably, but there is a difference. Polyneuropathy is more specific, and refers to a set of diseases characterized by multiple, often symmetrical nerve involvement. Peripheral neuropathy is more general, and can involve only one nerve, such as trigeminal neuralgia. Neuropathy is more general still, and can even mean involvement of the central nervous system.
Small fiber peripheral neuropathy is a form of polyneuropathy which refers specifically to the small fibers in the skin. This is the condition usually diagnosed with an epidermal nerve fiber density test (EFND), the "skin biopsy" often referred to here.
@burningfeetinphoenix, I don't quite understand your post about the podiatrist. If your skin biopsy was positive, then you do have small fiber peripheral neuropathy (SFPN). One way or another, I'd be careful about dealing with this podiatrist, as there is no evidence as yet that stem cells have a roll in treating any neuropathy.

Jump to this post

Many thanks @jeffrapp !!!

REPLY
@lisalucier

What did you find out from the 2nd biopsy, @burningfeetinphoenix ?

Jump to this post

@lisalucier – Hi Lisa, The results of the 2nd biopsy at the "certified" lab showed that I did not have Small Fiber Neuropathy. All of my nerve fiber densities (at three locations) were normal for my age. One was very slightly below normal but not much. These results were amazingly different than the first biopsy done this past summer which showed my epidermal nerves "severely" reduced in the two locations biopsied. For those inquiring about my second opinion, yes, my second opinion and second biopsy was ordered by a neurologist. In fact, it was ordered by Dr. Todd Levine who actually designed the protocol for the nerve biopsy test. Also, I never considered getting the "stem cell injections" from the Podiatrist. I had researched this treatment (actually with exesomes produced by stem cells). These exesomes do show promise but so far have not been fully researched and tested on humans. BTW Dr. Levine wrote the "bible" on SFN which is the book mentioned previously on this forum. I see him in February to review the results of the biopsy. The good news is the burning in my feet has subsided. However, I am still taking the Cymbalta and Phenytoin 10% compounded topical. I am not convinced nerves can grow back in a month although Dr. Levine seem to think this might be a possibility. I never found out what caused the supposed SFN and I'd still like to know. I'll keep searching as it may come back this summer when it is 120 deg out! Pam

REPLY

Great news @burningfeet! I never had the biopsy done, my neuro didn’t think it would change her treatment which was gabapentin for the pain. She is willing to do the test if I request but I also do not see how the results will effect any change in treatment for me. FYI, Dr. Levine does have a financial interest in one of the few labs available for testing the biopsies; from everything I’ve read, my knowing the cause will not change the treatment of idiopathic neuropathy unless you are found not to have neuropathy at all such as in your case. Hope your feet continue to improve. Helen

REPLY
@johnbishop

@barbie that's a short answer from a pain management doctor. Well, I did a quick search for you but I'm still not sure I get the point the doctor was trying to make with the text.

Mesenchymal stem cell exosomes: a two-edged sword in cancer therapy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6488158/

The Mayo Clinic uses Nanoparticle Tracking Analysis to Study the Behavior of Exosomes and Microvesicles
https://www.exosome-rna.com/the-mayo-clinic-uses-nanoparticle-tracking-analysis-to-study-the-behavior-of-exosomes-and-microvesicles/

Jump to this post

I found this site – https://directbiologics.com

REPLY

I don't understand "nerves growing back". My neurologist said that my nervous system is dying (parts of us die as we get older, with some people it's the heart or liver, kidneys or worse yet: the brain). Science hasn't yet devised a way to resurrect a dying nervous system. Medical researchers used to think that neuropathy was just for diabetics but not any more — there are too many people with neuropathy who don't have diabetes. It sounds like it doesn't have to have any cause other than "aging". More will be revealed to us as research continues. Peggy

REPLY
@pfbacon

I don't understand "nerves growing back". My neurologist said that my nervous system is dying (parts of us die as we get older, with some people it's the heart or liver, kidneys or worse yet: the brain). Science hasn't yet devised a way to resurrect a dying nervous system. Medical researchers used to think that neuropathy was just for diabetics but not any more — there are too many people with neuropathy who don't have diabetes. It sounds like it doesn't have to have any cause other than "aging". More will be revealed to us as research continues. Peggy

Jump to this post

My Neurologist said it is so common among older folks that it's also known as 'Greying of the Nerves'….

REPLY
@helennicola

Great news @burningfeet! I never had the biopsy done, my neuro didn’t think it would change her treatment which was gabapentin for the pain. She is willing to do the test if I request but I also do not see how the results will effect any change in treatment for me. FYI, Dr. Levine does have a financial interest in one of the few labs available for testing the biopsies; from everything I’ve read, my knowing the cause will not change the treatment of idiopathic neuropathy unless you are found not to have neuropathy at all such as in your case. Hope your feet continue to improve. Helen

Jump to this post

@helennicola – @burning feet here again. Yes I do know Dr. Levine has a financial interest in Corinthian Reference Lab. So what I would say about all this is either 1. The first biopsy was not done correctly or 2. The first biopsy was correct and the second showed the nerves grew back. There are other possibilities 3. 4. etc… too, but let's assume one of these two. The Dr. said and I quote "The burning feet was due to SFN (he also said the first biopsy was done incorrectly so how would one know?) due to a virus or something that went away". The second biopsy showed this was true (3. or this second biopsy could have been done incorrectly also). It is my understanding that small fiber nerves can grow back but take a long time to do this and usually because whatever was causing the SFN was removed from the equation…certainly not in one month however. I am attaching the report from Corinthian. My original biopsy showed 1.3/mm in the foot and 0.3/mm in the lower leg. The one result was slightly lower than normal but not low. Those "normal" ranges are age adjusted as these nerves do diminish with age. The significantly versus mild for the lower thigh comments in the report is confusing and I will discuss this discrepancy with the Dr. at my next appointment. I did get color photos of the epidermis and dermis with this report but they are difficult to see…So, my experience with the biopsy technique has not been conclusive so perhaps it is not worth having as you suggest…Pam

biopsy

REPLY
@iceblue

My Neurologist said it is so common among older folks that it's also known as 'Greying of the Nerves'….

Jump to this post

@iceblue – @burningfeet here. Yes, SF nerves diminish with age. Samples would be age adjusted and there is a normal range as a fucntion of age. Pam

REPLY

Interesting … I'm glad Mayo Clinic hosts this web loop so we can pass around information and the latest news,

REPLY

My latest email from the Foundation for Peripheral Neuropathy contained a really great source of education information links that I thought I would share with my fellow members.

Foundation for Peripheral Neuropathy – e-Catalog of Articles on Peripheral Neuropathy
https://www.foundationforpn.org/wp-content/uploads/2020/02/01.29.2020-Website-eCatalog.pdf

Liked by Jane, da20pilot

REPLY
@johnbishop

Hello @chandyjohn1, Welcome to Connect. I have no medical training or background but I think peripheral neuropathy and small fiber neuropathy have one thing in common – small fiber nerves. I shared a short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed in an earlier post in this discussion. Here is a link to the post with the video: https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/?pg=8#comment-332835

Have you been diagnosed with small fiber neuropathy or peripheral neuropathy?

Jump to this post

My doctor has diagnosed me with diabetic peripheral neuropathy.

REPLY

I had my first baby in February 2017 and started feeling symptoms (pain, tingling in feet) about 3 months afterward. We’ve done all kinds of blood tests and everything keeps coming back normal. You’ve never seen someone so disappointed at a normal result (except ruling out MS, of course!). I’ve gone to osteopaths, chiropractors, physical therapy, done lumbar, neck and brain MRIs — everything looks fine. I’ve been to two different neurologists. They both think it’s probably small fiber neuropathy, though I haven’t done the skin biopsy yet. The pain in my feet is getting much worse and it’s going up both legs. Then this past Saturday, I started feeling it in my hands and arms. Happened kind of quickly and it’s so much more bothersome than the feet and legs. I have a 3 year old, I need my hands. Will there be a day when I can’t feel her lovely, soft skin? Will I not be able to play the piano anymore? I’ve struggled with depression, anxiety and OCD since I was a child. You may imagine the panic I’m feeling now that I’m adding yet another form of torment to my life. I’m 37 years old and I feel like my life is over.

REPLY
@johnbishop

My latest email from the Foundation for Peripheral Neuropathy contained a really great source of education information links that I thought I would share with my fellow members.

Foundation for Peripheral Neuropathy – e-Catalog of Articles on Peripheral Neuropathy
https://www.foundationforpn.org/wp-content/uploads/2020/02/01.29.2020-Website-eCatalog.pdf

Jump to this post

Thank you for this url on neuropathy. There are so many instructive articles from medical marijuana to drugs that treat our pain.

REPLY
@carrie4803

I had my first baby in February 2017 and started feeling symptoms (pain, tingling in feet) about 3 months afterward. We’ve done all kinds of blood tests and everything keeps coming back normal. You’ve never seen someone so disappointed at a normal result (except ruling out MS, of course!). I’ve gone to osteopaths, chiropractors, physical therapy, done lumbar, neck and brain MRIs — everything looks fine. I’ve been to two different neurologists. They both think it’s probably small fiber neuropathy, though I haven’t done the skin biopsy yet. The pain in my feet is getting much worse and it’s going up both legs. Then this past Saturday, I started feeling it in my hands and arms. Happened kind of quickly and it’s so much more bothersome than the feet and legs. I have a 3 year old, I need my hands. Will there be a day when I can’t feel her lovely, soft skin? Will I not be able to play the piano anymore? I’ve struggled with depression, anxiety and OCD since I was a child. You may imagine the panic I’m feeling now that I’m adding yet another form of torment to my life. I’m 37 years old and I feel like my life is over.

Jump to this post

Hello @carrie4803, Welcome to Mayo Clinic Connect. Neuropathy can be the pits, especially when you can't get the answers you need. It also adds to your anxiety and fear of the future. You are not alone in how you feel or with the symptoms you have. The best suggestion I have is to learn as much as you can about your health condition and read the experiences of others who have shared what has helped them here on Connect. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Did your doctor offer any treatments or therapy for your symptoms?

I'm hoping @rwinney, @artscaping, and other members can share what helps them get through the day.

REPLY
Please login or register to post a reply.